TEN YEARS Post Brain Surgery ~ Reflection

This time ten years ago, 12/3/2008, I was under the knife, just three hours into an eight hour brain surgery. How do you measure a year?

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year? ~ Jonathan Larson

During my early recovery days, each day that passed was a monumental feat! Less pain, more mobility, fewer headaches and vertigo. One breath at a time. Looking back, healing from the pain was the easier part. I never expected the emotional & spiritual fallout that would follow.

I have observed that Medical practices in the USA focus on the physical symptoms as a measuring stick of healing progress. Less pain and an increase in quality of life = successful surgery. I agree only slightly with this statement. My recovery was/is more complex than just the physical. Before I take a hard left turn, I do want to share with you how I am doing physically post decompression. I still get migraines from time to time, I am a living barometer and sensitive to low/high barometric swings in the weather.  My sleeping has gotten better, but I am still plagued by some sleepless nights. (Don't get me started on what theories I have to explain missing time during the night that shows up on my Fitbit).  However, my quality of life has greatly improved and my hope has been restored in knowing I will have a long and happy life.

Now for the dark side of my journey...my life has been shaken up like an earthquake since 2008.

There is no doubt in my mind that I was "re-booted", awakened, during brain surgery. I came back a different version of me. I can't say that this happens to all brain surgery patients, but it absolutely happened to me. No one warned me that this was a possibility. There's was  no way to guard against it even if I knew what was going to happen. In the wake of this knowing, I did the only thing I could do, move forward and don't look back.

For a long while, I was angry at God for letting me survive brain surgery, only to have my life as I knew it figuratively burn to the ground til there was a pile of smoldering ashes left.  I know now, this transformation had to happen so that I could embrace what was in store for me just up the road.

2018 had been a momentous year. My Daddy lost his fight with cancer in May and moved into another realm. This has stirred up an unexpected review of my life. It's been painful to sit with such heavy grief that comes with losing a father, but it's also given me a renewed joy for life.

I am so very thankful for my life post braintail surgery. If I could go back in time, I wouldn't change a thing. Brain surgery was the wake up call I needed to fully embrace and discover what my purpose is during my lifetime here on the planet.

Completely UnRemarkable

Current Scan 2012

vs
Original scan 9/26/2006

According to the Dictionary, here's the definition for UnRemarkable: not worthy of note or attention;

Lacking distinction; ordinary. 

I was hopeful, hoping the MRI would reveal something ~ anything ~ a new revelation that would explain away the pain in my head. Most people would pray for a clean bill of health with nothing to write home about. But I'm not a part of that 'most people' crowd anymore. Brain surgery kinda stole that from me.

I was driving to my neuro surgeon this morning, looking forward to seeing the very first surgeon I met after been diagnosed with Chiari in 2006. A book on tape was playing in the car and I was thinking about my answer to a question asked: 

"When everything is stripped away from you, what gives you the strength to keep on going?"

 If you had asked me this question 6 years ago I wouldn't have hesitated before answering, my faith in God, of course. He loves us, cares for us.... but today, I'm not so sure.  One thing did come come to mind though ~ I can't just submit to the pain in my body ~ I've got Chiari friends both far and near who need me, who depend on me for friendship and guidance. As if an unspoken prayer for validation was asked, as soon as I checked in at the doctors office, I sat down and logged onto my email to pass the time as I waited for them to call my name. There at the top of the new emails in my inbox was an email from a very dear Chiari friend. We had exchanged a couple of heart to heart emails over the past week and she was concerned about me. Lil ole me ~ out of all the others out there who clamor for her attention. I immediately burst into tears. She gets me ~ we are in the same medical predicament ~ surgical candidates and yet not wanting to go back to surgery just yet.

What was I doing? Yes, I was following doctors orders by getting another baseline MRI, but who was I kidding? I'm a TCI patient ~ they are without a doubt the best of the best in the world and are celebrated Chiari gurus. How could I possibly expect anyone else to understand my complicated condition? So long story longer, I was greeted by the PA of the office and not the surgeon I was looking forward to seeing again. Nothing was found on my MRI that signaled a need for surgery. He recommended I see a pain management doc and a neurologist to help me figure out what steps to take to get an handle on my pain.

I feel like a college grad who was sent back to Kindergarten again ~

Approaching Storm

Elfin language:

Pres'tinin-The world is changing.

Hauranen bithnin-I feel it in the water.

Hunuthra meyahi-I feel it in the earth.

Ahustinin benilingi-I smell it in the air.

Storms in life seem to roll in and out like the tide. There's no stopping the endless thundering motion. Friday,
I found myself in a haze of deja vu as I sat patiently, waiting to hear my name called by a neuro-surgeon.

I've been putting off making an appointment ~ for about a year now ~ until my intrepid endocrinologist made an appointment for me.  I'm not a whiner or complainer, it's my first nature to grin and bear it ~ so that's what I've been doing for a while now. My doctor thought it would be a good idea for a local surgeon to get a baseline on me and keep an eye on me and my symptoms. Fair enough ~ but I wasn't really wanting to open Pandora's box, again.  

When the nurse walked in to gather my medical history I braced myself for a barrage of questions. I had to be thorough and brief at the same time or the appointment would have lasted several hours. I've got medical history and lots of it.! When she started questioning me about my surgery for Chiari I almost laughed at her when she innocently said, "your Chiari Malformation was removed during your surgery?" Seriously? It's not a tumor you can simply remove and go on with your life. I really wish the staff at neurosurgery offices would be a bit more educated on the afflictions of the patients.

I digress ~ after a battery of basic neuro tests, it was deemed that there wasn't anything noticeable wrong with me. Duh ~ a two hour MRI with and without contrast has been scheduled for a few weeks down the road. It will be good to check in and see what my Braintail has been up to. I'm not sure what to hope for. A part of me wants them to find a tumor that's been responsible for turning my life upside down. Another part of me wants them to find evidence of syringomyelia. My biggest fear is that the MRI will reveal nothing out of the ordinary. At this point I am needing something concrete ~ something to focus my anger on for causing pain again and again.

The irony of my invisible disease ~